Friday, May 1, 2009


I've been asked a few times "How" Danny is able to get here is goes. Danny has what you call a floppy airway there are three medical terms that go with floppy airway, but I'll spare you. That's why he sounds like he is snoring even when awake, pauses his breathing when sleeping (sleep apnea), and can NOT swallow well (not even his own secretions). At birth we fed him with a NG tube which is a tube we inserted into his nose and it ran down into his stomach until he was 3 months and then he had a Gastrostomy feeding tube (G-tube) placed in his belly that goes directly into his stomach. There are many different kinds but Danny's uses a Mic-key button.
It comes like this for his home medical supply company and they deliver it right to our door. I replace his every 3 months at home, but I know some mom's have the doctor replace it.
This is what comes in the kit to replace it.
This is the actual "button" that is inserted into DannyYou can see a white port where I'm holding onto the tube....there I insert a syringe with water and that blows up the balloon, holding the button in place in his stomach. This is the hole without the button in....this hole will close up pretty quickly without having the tube in to hold it open (if not in after 30 minutes I heard you are looking at a possible surgery to have put back in, knock on wood, we've never had that issue.....but I've accidentally pulled it out 2 times). It really is like an earring hole.

This is a 3month old button after it is taken out.....GROSS! And the company says you could really keep it in for up to year., um NO I don't think so .Here is what his tube looks like without the extension for feeding him. The big scar that runs up and down his tummy is a surgery he had when he was 6 months old called a Nissen. He had such bad acid reflux he could throw up clear across a room and the acid was eating at his esophagus already. The Nissen prevents anything from coming out of his stomach any longer. So he can no longer throw up, burp, or have reflux.Here is the extension I have to connect to the button and from there we either connect a syringe full of food, syringes of his meds (all liquid), and his feeding pump which he uses through the night to be fed. All which goes directly into his stomach to bypass his airway. I vent him (relieve gas and any extra food) by pulling it out from here too. So when he is sick or bloated I can relieve him instantly :)

Despite his size Danny only get 32oz of liquid a day...he gets half (16oz) of formula and the other half (16oz) of water in a 24 hour day. THAT'S IT! Due to where his brain damage is and the lack of movement he gains weight at a very fast pace. Plus he MUST have his mom's metabolism so the lil guy is doomed to be "Big a Boy". I hope that made sense :) Thanks for being intersted in my family. Don't be afraid to ask I love to talk about my kids and educate so people feel more comfortable.

Not too much else to report....I'm still trying to get things back in order here. The bruise on my leg is still growing is size and wow the colors, LOL! Well not getting much done sitting on the computer so .... better get moving before my pissy attitude get worse as my projects keep staring me in the face and I just can't seem to have time to do them.


Anonymous said...

Button check!!! Just stopping by to say bye and to tell you that Regan asks about Danny and Arianna ALL the time! Hope your leg feels better and think of us sweltering in this miserable Florida weather. Danny probably doesn't know what to do without me doing a button check every five minutes!! ;)

~Becky and Regan (one of Danny's many girlfriends!)

Anonymous said...

I messed up in my earlier post, I meant to say "hi", not "bye"!!!!